Smashed face syndrome, is this true???

nanwilson wrote:Why would the Hybrid be your last choice?

Probably same reason it was/is my last choice. I simply didn't want to use it. I probably could have made it work but I just didn't/don't want to. Sometimes it just comes down to "want" vs need.

If I had been forced to use FFM for whatever reason I probably would not have been compliant. I hated them that much. Besides with my neck issues I had 2 choices..
FFM and maybe better therapy but no sleep due to pain or extremely fragmented sleep.
or
Few leaks with nasal pillows maybe impacting therapy somewhat and being able to sleep decently.

Just personal choice and until other options fail completely if a person doesn't want to use FFM for whatever reason, I will try to help with whatever choice they choose.

My 2 cents, as I write press releases often. ALWAYS site your source. For example, in the last paragraph of this one:

"Dr Ira L Shapira is an author and section editor of Sleep and Health Journal, President of I HATE CPAP LLC"

So, the study is far less than biased, and the release would - of course - support the theory that CPAP is bad. This isn't to say that anyone did anything wrong, they clearly disclose their bias in the article. It's just an FYI that I wouldn't take anything they say as fact without some other - independent - study to back it up.

Pugsy I am not familiarised with software yet, I am going to ask my doc about it next time, although I've got an access to the clinician mode of my autoPAP machine, and there is a report about the leaks, AHI and HI. I can also set leak alert. I'm new to it, depressed that I've got this problem and have to use CPAP, I know that I will get better over time (with this depression also). Many of you must have had this problem also. Or maybe I'm different that I have questions like: why me? why do I have to struggle with this? I don't know anyone in my country yet whou would be as young as I am and has this issue. So I am happy that I can have support here, I am really grateful for all of you. What is more, I don't have sleep apnea but UARS which is a little different condition, but causes almost the same damage and treatment is the same. In my case only MMA surgery along with soft palate shrinkage would work, maybe someday I will do this... UPPP would work but I am terrified and I think I will never do this. My problem is elongation of the soft palate, it collapses into the back of my airway completely, I don't even snore because this collapse is total.

Nanwilson, I just find it hard to get use to such type of mask, which is not so much different than FFM for me, or maybe I am wrong here... I have an access to the Liberty mask in my country, so maybe I will try it.

Pugsy, Dojers I am sorry that you have such problems with your necks like apnea would not be enough...

I would not want to be so scared of this Smashed face syndrome.... interestingly even wikipedia says about it... ehhh and that's why I am scared of any type of mask which "sits" on cheeks, or maxilla or mandible level like FFM or hybrid. I will try not to maunder anymore....

TalonNYC: I know that she recommends oral appliances and this is very unprofessional to write that it can be used in patients with mild to moderate OSA (without specifying), in my case it doesn't work AT ALL because it doesn't adress my obstruction level, so of course I am trying to take this article with a pinch of salt, but I know as I said before, that bones can actually move with light pressure.

CatherineF wrote: TalonNYC: I know that she recommends oral appliances and this is very unprofessional to write that it can be used in patients with mild to moderate OSA (without specifying), in my case it doesn't work AT ALL because it doesn't adress my obstruction level, so of course I am trying to take this article with a pinch of salt, but I know as I said before, that bones can actually move with light pressure.

Absolutely, for me I was more upset that she didn't quote any other studies. I am happy that she admits that the CPAP devices do have some benefit and are the best choice for some users though.

You have the S8 Autoset?
Does it have this type of data card in the back? https://www.cpap.com/productpage/resmed ... -card.html

If so, you will need a very special card reader to utilize the software.

Software is free. No need at ask doctor for it. The special card reader is pricey and hard to find because the S8 models have been discontinued for quite some time.

The newer series S9 Autoset uses a simple SD card to transfer data to software.

While you do have data on screen it is not as comprehensive as seeing the graphs.

Your supplier gave you a discontinued model. If there is no way to swap it for newer model we can find a card reader somewhere but they run about $100 US plus shipping.
It would really be helpful for you to see the actual leak line instead of a number so that you can really see if the leak or mouth breathing is bad enough to seriously impact therapy.

A comment on Smashed Face Syndrome...

I believe it is possible to crank the straps of a mask up to the point that it can alter the facial structure. However, I think the discomfort involved would have most people throwing their masks across the room before that actually happened.

It is also possible to shrink your head by putting a band around it and tightening it up. All industrial workers suffer from this because they are required to wear hard hats at the job...

If I were a dentist that ran a site talking about the discomfort and down sides to xPAP masks, I would promote dental appliances, but am not sure I would go so far as to push the fear button by talking about the possibility of facial disconfiguration. I would also notice that a mask like the Swift FX doesn't contact the lower jaw.

I worry more about Pig Nose Syndrome.

Pugsy: it is a "trial" device, I've got UARS and I have no cost refund, because in my country I can only get a refund when I have diagnosed OSA, so probably I will always have to pay for devices from my own pocket entirely :/ Unless they will accept UARS as a serious sickness... In my country CPAP devices can be bought without any prescription, I know that in US it is impossible.

HoseCrusher: I can hardly tell that I am using anything now, it will be my third night with CPAP (first was 1h with FFM Quattro, second with Swift, but I had no sleep at all...), today I'll give Quattro a try again. I have to get use to CPAP no matter what and no matter how long it takes! I think that for Swift the risk of SFS is minimal.

Ahh, So you can purchase the machine you want. In that case consider the S9 AutoSet. More data is gathered with it than the S8. No pricey card reader and software is easily obtained. It uses an ordinary SD card. If your computer has a SD slot nothing else is needed. If it doesn't a generic inexpensive card reader USB adapter will work.

To see examples of the software reports watch this little video.
http://montfordhouse.com/cpap/resscan_tutorial/

Theoretically I can buy any... I have to have money only, I don't want to ask my parents and myself I am not rich enough yet. We've got a company here that sells Resmed machines, masks and everything else. I still don't know how it is possible without a prescription... Isn't that weird?

Catherine, keep looking and I am sure you will be able to come up with something that works.

I might suggest that you visualize what a good nights sleep would feel like, and how a comfortable mask will grace your face like a comfortable pair of shoes feel on your feet.

We all know what a good pair of shoes feels like, but most of us don't know about masks because we haven't been wearing them for years. The two are related... kind of..., but you get the idea.

Now, don't get your expectations up too high. Just like you can't find and keep the perfect pair of shoes (they always wear out), you won't be able to find a perfect mask. However, it is possible to find a very comfortable fit.

A little give, a little take, an adjustment here, an adjustment there, and WHAM, a restful nights sleep...

TalonNYC wrote:My 2 cents, as I write press releases often. ALWAYS site your source. For example, in the last paragraph of this one:

"Dr Ira L Shapira is an author and section editor of Sleep and Health Journal, President of I HATE CPAP LLC"

So, the study is far less than biased, and the release would - of course - support the theory that CPAP is bad. This isn't to say that anyone did anything wrong, they clearly disclose their bias in the article. It's just an FYI that I wouldn't take anything they say as fact without some other - independent - study to back it up.

Yes. Not only is she a CPAP hater, she's also in the business of fitting people with dental appliances. Hence, it's similar to a long distance trucking company doing a study on the problems of shipping by rail.

I absolutely love the Hybrid. I keep going back to it. Anyone who says it would be their last choice hasn't tried it.